Identifying targets for outpatient palliative care wait times in Ontario.

2014 ◽  
Vol 32 (30_suppl) ◽  
pp. 258-258
Author(s):  
Victoria Zwicker ◽  
Sandy Buchman ◽  
Denise Marshall ◽  
Sara Urowitz

258 Background: A wait time indicator is being developed for outpatient palliative care services for cancer patients in Ontario. Once developed, this indicator will become the first palliative performance measure for Regional Cancer Centres (RCCs) across the province. The wait time indicator will serve as one measure of accessibility, a key dimension of health care quality. However, in order to create this indicator, it is first necessary to identify targets against which current performance can be compared. Methods: A systematic review of the academic literature was conducted to a) identify existing palliative care wait time standards, and b) to gather evidence on how delays in care impact patient outcomes. An environmental scan was also conducted to identify wait time standards and benchmarks used in other Canadian provinces or territories. In addition, existing palliative care triaging tools and wait time standards from Ontario RCCs were collected. A consensus panel comprised of palliative clinicians, patient and family advisors, and administrators was convened to articulate a maximum acceptable wait time and a provincial target for the percentage of patients who should be seen within the maximum acceptable wait time. Results: The environmental scan and literature review found no existing standards or benchmarks for outpatient palliative care services. However, there are a number of triaging tools and wait time standards in use at Ontario RCCs for these services. Taking these tools and standards into consideration, the consensus panel identified a wait time benchmark and a provincial target for Ontario RCCs. Conclusions: This foundational work will help to highlight gaps and variation in timely access to palliative care services in Ontario. The benchmarks and targets identified through this process as well as the methods used can be useful for other jurisdictions seeking to measure and improve wait times for these services. Next steps include ensuring that data is of sufficient quality, identifying incremental improvement targets for the province based on current performance, and further refining the implementation of a palliative care wait time indicator for quality improvement.

2021 ◽  
pp. bmjspcare-2020-002764
Author(s):  
Catherine Owusuaa ◽  
Irene van Beelen ◽  
Agnes van der Heide ◽  
Carin C D van der Rijt

ObjectivesAccurate assessment that a patient is in the last phase of life is a prerequisite for timely initiation of palliative care in patients with a life-limiting disease, such as advanced cancer or advanced organ failure. Several palliative care quality standards recommend the surprise question (SQ) to identify those patients. Little is known about physicians’ views on identifying and disclosing the last phase of life of patients with different illness trajectories.MethodsData from two focus groups were analysed using thematic analysis with a phenomenological approach.ResultsFifteen medical specialists and general practitioners participated. Participants thought prediction of patients’ last phase of life, i.e. expected death within 1 year, is important. They seemed to find that prediction is more difficult in patients with advanced organ failure compared with cancer. The SQ was considered a useful prognostic tool; its use is facilitated by its simplicity but hampered by its subjective character. The medical specialist was considered mainly responsible for prognosticating and gradually disclosing the last phase. Participants’ reluctance to such disclosure was related to uncertainty around prognostication, concerns about depriving patients of hope, affecting the physician–patient relationship, or a lack of time or availability of palliative care services.ConclusionsPhysicians consider the assessment of patients’ last phase of life important and support use of the SQ in patients with different illness trajectories. However, barriers in disclosing expected death are prognostic uncertainty, possible deprivation of hope, physician–patient relationship, and lack of time or palliative care services. Future studies should examine patients’ preferences for those discussions.


Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 384-384
Author(s):  
Vinay B Rao ◽  
Emmanuelle Belanger ◽  
Pamela C Egan ◽  
Thomas W. LeBlanc ◽  
Adam J Olszewski

Background: Patients with hematologic malignancies often receive aggressive care at the end of life (EOL), leading to lower quality of life. Access to early palliative care may improve EOL care outcomes, its benefits are less well established in hematologic malignancies than in solid tumors. We sought to describe the use of palliative care services among Medicare beneficiaries with hematologic malignancies, and associated EOL quality measures. Methods: Using the linked Surveillance, Epidemiology, and End Results (SEER)-Medicare registry, we studied fee-for-service Medicare beneficiaries diagnosed with acute or chronic leukemias, lymphomas, myeloma, myelodysplastic syndrome, or myeloproliferative neoplasms, who died in 2001-2015. We described trends in the use of billed palliative care services (BPCS, identified by codes in clinician encounter claims: ICD-9 V66.7 or ICD-10 Z51.5). Among patients surviving >30 days from diagnosis, we compared baseline characteristics and EOL care quality metrics for patients with and without "early" BPCS (defined as services initiated >30 days before death), as well as Medicare spending in the last 30 days of life. Multivariable models were fitted as appropriate according to outcome variable (robust Poisson, negative binomial, or log-gamma) and adjusting for hematologic malignancy histology, patients' age, sex, race, marital status, Medicaid co-insurance, comorbidity index and performance status indicator (calculated from claims within 1 year before death), and year of death. Results: Among the 139,191 decedents, median age at death was 82 years and 46.4% were women. The proportion with any BPCS was 5.2% overall during the study period, and it increased from 0.4% in 2001 to 13.3% in 2015 (Fig. A). Median time from the first BPCS encounter to death was 10 days (interquartile range, 3 to 39), and it increased from 6 days in 2001 to 12 days in 2015. Most (84.3%) BPCS encounters occurred during hospital admissions (Fig. B), and this proportion did not significantly change over time. Although the number of BPCS claims increased over time for any specialty, there was a relative increase in claims billed by nurse practitioners (from 7.9% in 2001/05, to 29.7% in 2011/15) or palliative care specialists (from 0% to 15.6%, respectively). Use of early BPCS remained rare, but increased from 0.2% in 2001 to 4.3% in 2015. Overall, early BPCS constituted 28.5% of all first BPCS. A relatively higher proportion of early BPCS occurred in the ambulatory setting (15.0%). In the comparative cohort of patients who survived >30 days from diagnosis (N=120,741, Table), the use of early BPCS (1.7% overall) was more frequent in acute leukemia than in other histologies, adjusting for other factors. It was also significantly more frequent among Black patients, those with higher comorbidity indices or poor performance statuses, and those who received active chemotherapy at any point. Presence of early BPCS was associated with significantly improved EOL care quality metrics, including higher rates of hospice use, longer hospice length of stay, and lower use of aggressive measures, like repeated hospitalizations, admissions to the intensive care unit, and receipt of chemotherapy in the last 14 days of life (see Table). Early BPCS were also associated with significantly lower average Medicare spending in the last 30 days of life (marginal means $21,380 with and $23,651 without early BPCS, P<.001). Conclusion: Use of BPCS among Medicare beneficiaries with hematologic malignancies has increased steeply in recent years, but most encounters still occur within days of death in the inpatient setting. This pattern potentially limits the benefits that could be achieved for patients and their caregivers with earlier institution of palliative care. Early BPCS are associated with better EOL care quality metrics similar to those observed in solid tumors, but causation remains uncertain in retrospective claims data, especially given known underutilization of palliative care billing codes in non-terminal patients. Our results support the need for prospective trials of early palliative care for patients with hematologic malignancies, and for research about the barriers to early access to palliative care that may be specific to this patient population. Disclosures LeBlanc: Pfizer Inc: Consultancy; Heron: Membership on an entity's Board of Directors or advisory committees; Daiichi-Sankyo: Membership on an entity's Board of Directors or advisory committees; CareVive: Consultancy; Agios: Honoraria, Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; Medtronic: Membership on an entity's Board of Directors or advisory committees; Otsuka: Consultancy, Membership on an entity's Board of Directors or advisory committees; Helsinn: Consultancy; Astra Zeneca: Consultancy, Research Funding; Amgen: Membership on an entity's Board of Directors or advisory committees; AbbVie: Membership on an entity's Board of Directors or advisory committees; Seattle Genetics: Consultancy, Research Funding; American Cancer Society: Research Funding; Duke University: Research Funding; Jazz Pharmaceuticals: Research Funding; NINR/NIH: Research Funding; Flatiron: Consultancy; Celgene: Honoraria. Olszewski:Genentech: Research Funding; TG Therapeutics: Research Funding; Adaptive Biotechnologies: Research Funding; Spectrum Pharmaceuticals: Research Funding.


2021 ◽  
Author(s):  
Catherine Walshe ◽  
Ian Garner ◽  
Lesley Dunleavy ◽  
Nancy Preston ◽  
Andy Bradshaw ◽  
...  

Background: Volunteers are common within palliative care services, and provide support that enhances care quality. The support they provided, and any role changes, during the COVID-19 pandemic are unknown. Aims: To understand volunteer deployment and activities within palliative care services, and to identify what may affect any changes in volunteer service provision, during the COVID-19 pandemic. Methods: Multi-national online survey disseminated via key stakeholders to specialist palliative care services, completed by lead clinicians. Data collected on volunteer roles, deployment, and changes in volunteer engagement. Analysis included descriptive statistics, a multivariable logistic regression, and analysis of free-text comments using a content analysis approach. Results: 458 respondents: 277 UK, 85 rest of Europe, and 95 rest of the world. 68.5% indicated volunteer use pre-COVID-19. These were across a number of roles (from 458): direct patient/family facing support (58.7%), indirect support (e.g. driving) (52.0%), back office (48.5%) and fundraising (45.6%). 11% had volunteers with COVID-19. Of those responding to a question on change in volunteer deployment (328 of 458) most (256/328, 78%) indicated less or much less use of volunteers. Less use of volunteers was associated with being an in-patient hospice, (OR=0.15, 95%CI = 0.07-0.3 p<.001). This reduction in volunteers was felt to protect potentially vulnerable volunteers and with policy changes preventing volunteers from supporting services. However, adapting was also seen where new roles were created, or existing roles pivoted to provide virtual support. Discussion and conclusion: Volunteers were mostly prevented from supporting many forms of palliative care, particularly in in-patient hospices, which may have quality and safety implications given their previously central roles. Volunteer re-deployment plans are needed that take a more considered approach, using volunteers more flexibly to enhance care while ensuring safe working practices. Consideration needs to be given to widening the volunteer base away from those who may be considered to be most vulnerable to COVID-19


Author(s):  
Catherine Walshe ◽  
Ian Garner ◽  
Lesley Dunleavy ◽  
Nancy Preston ◽  
Andy Bradshaw ◽  
...  

Background: Volunteers are common within palliative care services, and provide support that enhances care quality. The support they provided, and any role changes, during the COVID-19 pandemic are unknown. The aim of this study is to understand volunteer deployment and activities within palliative care services, and to identify what may affect any changes in volunteer service provision, during the COVID-19 pandemic. Methods: Multi-national online survey disseminated via key stakeholders to specialist palliative care services, completed by lead clinicians. Data collected on volunteer roles, deployment, and changes in volunteer engagement. Analysis included descriptive statistics, a multivariable logistic regression, and analysis of free-text comments using a content analysis approach. Results: 458 respondents: 277 UK, 85 rest of Europe, and 95 rest of the world. 68.5% indicated volunteer use pre-COVID-19 across a number of roles (from 458): direct patient facing support (58.7%), indirect support (52.0%), back office (48.5%) and fundraising (45.6%). 11% had volunteers with COVID-19. Of those responding to a question on change in volunteer deployment (328 of 458) most (256/328, 78%) indicated less or much less use of volunteers. Less use of volunteers was associated with being an in-patient hospice, (OR=0.15, 95% CI = 0.07-0.3 p<.001). This reduction in volunteers was felt to protect potentially vulnerable volunteers, with policy changes preventing volunteer support. However, adapting was also seen where new roles were created, or existing roles pivoted to provide virtual support. Conclusion: Volunteers were mostly prevented from supporting many forms of palliative care which may have quality and safety implications given their previously central roles. Volunteer re-deployment plans are needed that take a more considered approach, using volunteers more flexibly to enhance care while ensuring safe working practices. Consideration needs to be given to widening the volunteer base away from those who may be considered to be most vulnerable to COVID-19.


Author(s):  
Ros Scott

This chapter explores the history of volunteers in the founding and development of United Kingdom (UK) hospice services. It considers the changing role and influences of volunteering on services at different stages of development. Evidence suggests that voluntary sector hospice and palliative care services are dependent on volunteers for the range and quality of services delivered. Within such services, volunteer trustees carry significant responsibility for the strategic direction of the organiszation. Others are engaged in diverse roles ranging from the direct support of patient and families to public education and fundraising. The scope of these different roles is explored before considering the range of management models and approaches to training. This chapter also considers the direct and indirect impact on volunteering of changing palliative care, societal, political, and legislative contexts. It concludes by exploring how and why the sector is changing in the UK and considering the growing autonomy of volunteers within the sector.


Author(s):  
Matthew Hotopf

Depression in palliative care is common, under-recognised and has significant impacts for sufferers. There are effective treatments but often a shortage of staff to provide them. This chapter sets out a number of key issues to consider when assessing and treating individual patients and considers the way in which palliative care services can innovate to provide a population level response to depression. Palliative care staff can be trained to deliver basic depression care and follow simple protocols to initiate, monitor and adjust antidepressant treatment. These approaches have been tested in trials in cancer care but the challenge is to take these approaches from research trials conducted in centres of excellence with good resources, to other settings.


Author(s):  
Valeria Cardenas ◽  
Anna Rahman ◽  
Yujun Zhu ◽  
Susan Enguidanos

Background: Despite some insurance plans now paying for home-based palliative care, recent reports have suggested that insurance coverage for palliative care may be insufficient in expanding patient access to home-based palliative care. Aim: To identify patients’ and caregivers’ perceived barriers to home-based palliative care and their recommendations for overcoming these barriers. Design: We conducted a qualitative study using semi-structured individual interviews. Our interview protocol elicited participants’ perspectives on home-based palliative care services; positive and negative aspects of the palliative program explanation; and suggestions for improving messaging around home-based palliative care. Setting/Participants: Twenty-five participants (patients, proxies, and their caregivers) who were eligible for a randomized controlled trial of home-based palliative care were interviewed by telephone. Results: Themes related to home-based palliative care referral barriers included reluctance to have home visits, enrollment timing, lack of palliative care knowledge, misconceptions about palliative care, and patients’ self-perceived health condition. Themes related to recommendations for overcoming these obstacles included ensuring that palliative care referrals come from healthcare providers or insurance companies and presenting palliative care services more clearly. Conclusion: Findings reinforce the need for additional palliative care education among patients with serious illness (and their caregivers) and the importance of delivering palliative care information and referrals from trusted sources.


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